All the old things are coming back. My blood sugars have skyrocketed to above 600. I have lost ten pounds in as many days. I am talking to doctors, three of them today, my primary care physician, my endocrinologist, and my oncologist. I meet with my oncologist again tomorrow to discuss going back on chemo earlier than planned. I am very concerned that the cancer is making an aggressive comeback. That must be met and met soon or I may suffer some very difficult setbacks.
My main concerns right now are blood sugars and stress. These two factors seem to hold great importance right now. Losing the weight is a concern, but not a great concern. Vanity is a factor here. I want to end up at or near 200 pounds but not if I have to have some reserve left for emergencies.
Tomorrow when I meet with my oncologist I will have some very direct questions that he will no doubt find very uncomfortable. I won't cover them because they will make my audience rather uncomfortable too. But this is very much a life and death struggle and the answers are very important to me.
So tonight I will take my super dooper pain pills and try to get some sleep. tomorrow is going to be tough.
Monday, November 30, 2009
Thursday, November 26, 2009
Wednesday, November 25, 2009
Happy Thanksgiving
I have the flu so any plans for celebrating at our house are dashed. But I am making plans for the relatives to pick up the meal and transport it elsewhere so my family can get together and enjoy it without me and my wife.
I hope all of you out there can get their little bit of family togetherness out of the way with a minimum of family issues. We have so much to be thankful for when you think about it. I may be sick as a horse but even I can be thankful that families all over the country are renewing their family relationships that they are all thankful that their family has the love and bonds that it does.
I am personally thankful for the hydrocodon my doctor prescribed because it takes the nasty edge off the symptoms. I have spent all day in bed going out only to have CT done to ensure that this is not a cancer sourced affliction. I feel like a bus has run over me every hour for 10 straight hours. Dehydrated, vertigo and nausea. Bones and muscles in a contest to see what hurts worse. Again, thanks so much for hydrocodon.
I am also thankful for Nutri-Nazi who is soldiering on despite the bad news. The woman has earned her place in my heart and my undying gratitude. They just don't get any better than Nutri-Nazi, strong shoulders, nice firm butt and a sense of humor for when her husband gets sick at the worst possible time. (I had to put the firm butt comment in because her one failing is believing that her body has started to sag. Far from it, she looks like she is 20 years younger than she is and she has perfect skin besides.) She has helped me through more catastrophes, disasters and just plain bad days than any woman should have to put up with. I doubt I would be here today were it not for her single minded drive to get me through all this stuff. Thank you God for my Nutri-Nazi.
I hope all of you out there can get their little bit of family togetherness out of the way with a minimum of family issues. We have so much to be thankful for when you think about it. I may be sick as a horse but even I can be thankful that families all over the country are renewing their family relationships that they are all thankful that their family has the love and bonds that it does.
I am personally thankful for the hydrocodon my doctor prescribed because it takes the nasty edge off the symptoms. I have spent all day in bed going out only to have CT done to ensure that this is not a cancer sourced affliction. I feel like a bus has run over me every hour for 10 straight hours. Dehydrated, vertigo and nausea. Bones and muscles in a contest to see what hurts worse. Again, thanks so much for hydrocodon.
I am also thankful for Nutri-Nazi who is soldiering on despite the bad news. The woman has earned her place in my heart and my undying gratitude. They just don't get any better than Nutri-Nazi, strong shoulders, nice firm butt and a sense of humor for when her husband gets sick at the worst possible time. (I had to put the firm butt comment in because her one failing is believing that her body has started to sag. Far from it, she looks like she is 20 years younger than she is and she has perfect skin besides.) She has helped me through more catastrophes, disasters and just plain bad days than any woman should have to put up with. I doubt I would be here today were it not for her single minded drive to get me through all this stuff. Thank you God for my Nutri-Nazi.
Tuesday, November 24, 2009
Some Housekeeping issues
Over the several months that I have maintained this blog I have made a few statements or mentioned things were going on.
First, the neighbor that said I had to stick around to help raise his new baby daughter. He and his wife, and baby, moved in August. They now live some forty miles away. We see each other very seldom anymore.
Next, I said I was going to build a CNC machine. Well, I got some of the software, a computer and some parts to build it. But the project sat idle because in my gut I didn't feel like it was going to be accurate enough to do the job. I was proved correct when the source of my design admitted it had some problems along the same lines I had concerns about. I still plan to build one I just have to get a design idea that will fit my requirements. I also play around with the idea of getting a machine lathe.
I talked about getting a job and doing some programming. Well, that is still on the table, just what direction it might go is up in the air. I have studied .NET and I have seen the sorts of things there that would drive a logical thinker out the door. My research has shown that .NET is quite probably the worst collection of ways to do things in programming for the web that I have encountered so far. And it keeps getting worse with everything I learn. I have read on every version of the software back to the beginning at Visual basic, none of which is entirely downward compatible, and it just gets worse the deeper I dig. I have decided to go with PHP and MySQL because they are smoother ways to go and they are not M/S, they are open source. You may wonder what this has to do with cancer. It is simple really. Programming is something to do going forward that might actually pay for the life I will be living after I get cured.
And finally, the problem with my stent. Nobody much showed any interest in pursuing the pain, so it went away. It is not all good though. My blood sugars are back to 250 to 350. I am losing weight at the rate of about 3 pounds a week. There may be some reasons for that besides the cancer coming back. For one I have been unduly stressed out by a member of my extended family who has proven to be more irrational than even I had guessed and I thought she was bat shit crazy before. When a relative exceeds even the worst expectations, then it is time to isolate that virus and limit the damage that person might cause. But it has been a very trying week while she wrote email after email to me, each completely repudiating the previous and each more strident then anything before, even though I answered only the first of them. She held out for three more messages and each got more strident. All over Thanksgiving dinner. Jeez, I am thinking of leaving town for Christmas. But in the meantime I have been very stressed out and drinking to get a distance between me and reality. I am getting to hate drinking. This world needs alternatives to getting drunk to reduce stress. The obvious solution to removing a stress source is murder but there are actual legal strategies in place to directly discourage that sort of behavior. So I have to sort out how I will de-stress the holidays and relatives and avoid drinking myself into oblivion. Apparently exercise is a possibility, but with some exclusions.
So I go into Thanksgiving week with some optimism. I put all my Steely Dan on and played it loud all day and I feel better. Now I am casting about for some way to get an escape in between now and the end of December when my life goes dark again. I wish there was a way to vacation from cancer. I'll have to settle for a vacation from the every day and maybe for a while during that respite I won't be fixated on this cancer.
First, the neighbor that said I had to stick around to help raise his new baby daughter. He and his wife, and baby, moved in August. They now live some forty miles away. We see each other very seldom anymore.
Next, I said I was going to build a CNC machine. Well, I got some of the software, a computer and some parts to build it. But the project sat idle because in my gut I didn't feel like it was going to be accurate enough to do the job. I was proved correct when the source of my design admitted it had some problems along the same lines I had concerns about. I still plan to build one I just have to get a design idea that will fit my requirements. I also play around with the idea of getting a machine lathe.
I talked about getting a job and doing some programming. Well, that is still on the table, just what direction it might go is up in the air. I have studied .NET and I have seen the sorts of things there that would drive a logical thinker out the door. My research has shown that .NET is quite probably the worst collection of ways to do things in programming for the web that I have encountered so far. And it keeps getting worse with everything I learn. I have read on every version of the software back to the beginning at Visual basic, none of which is entirely downward compatible, and it just gets worse the deeper I dig. I have decided to go with PHP and MySQL because they are smoother ways to go and they are not M/S, they are open source. You may wonder what this has to do with cancer. It is simple really. Programming is something to do going forward that might actually pay for the life I will be living after I get cured.
And finally, the problem with my stent. Nobody much showed any interest in pursuing the pain, so it went away. It is not all good though. My blood sugars are back to 250 to 350. I am losing weight at the rate of about 3 pounds a week. There may be some reasons for that besides the cancer coming back. For one I have been unduly stressed out by a member of my extended family who has proven to be more irrational than even I had guessed and I thought she was bat shit crazy before. When a relative exceeds even the worst expectations, then it is time to isolate that virus and limit the damage that person might cause. But it has been a very trying week while she wrote email after email to me, each completely repudiating the previous and each more strident then anything before, even though I answered only the first of them. She held out for three more messages and each got more strident. All over Thanksgiving dinner. Jeez, I am thinking of leaving town for Christmas. But in the meantime I have been very stressed out and drinking to get a distance between me and reality. I am getting to hate drinking. This world needs alternatives to getting drunk to reduce stress. The obvious solution to removing a stress source is murder but there are actual legal strategies in place to directly discourage that sort of behavior. So I have to sort out how I will de-stress the holidays and relatives and avoid drinking myself into oblivion. Apparently exercise is a possibility, but with some exclusions.
So I go into Thanksgiving week with some optimism. I put all my Steely Dan on and played it loud all day and I feel better. Now I am casting about for some way to get an escape in between now and the end of December when my life goes dark again. I wish there was a way to vacation from cancer. I'll have to settle for a vacation from the every day and maybe for a while during that respite I won't be fixated on this cancer.
Friday, November 20, 2009
Friday night and nothing has happened
My gastroenterologist is out of the office so there will be no emergency of any kind, unless I grow scales and non-flight capable wings and get all reptilian and swoop down on the peasants in the next village and breathe fire all over them. So I sit and wait for the possibility of absolutely nothing happening of any substance over the weekend.
As if having a potentially fatal cancer isn't enough for me to think about, now I get to be concerned about a surgically implanted stretched spring possibly going awry in my innards. Thrill a minute around here I'll tell you.
As if having a potentially fatal cancer isn't enough for me to think about, now I get to be concerned about a surgically implanted stretched spring possibly going awry in my innards. Thrill a minute around here I'll tell you.
Yeah, about that stent...
Seems I developed a very bad reaction Wednesday. Later in the day I suffered extreme nausea and vertigo, and a few other symptoms that are less obvious. First off a thirst that couldn't be quenched, my urine turned yellow, very yellow and a fever. I didn't feel good and sleeping seemed to be a relief. Slept pretty much from Wednesday afternoon to Thursday morning. Thursday I got a doctor's appointment for what I thought was the flu. Today the fever is all but gone, never had the body aches and the pain in my upper chest is still there. After breakfast this morning I felt uncomfortable, right where the biliary stent is. (I'm learning medical terms now just to keep up with the situation.) I called my primary care physician and appraised him of the situation. His office called me back to get the number of the doctor who placed the stent. So I looked his number up on the internet and called them back and gave him the proper spelling of his name and phone number.
Phone calls are ensuing. Primarily to my gastroenterologist who placed the stent. I have a while before this comes to any sort of climax. But worst case I may end up back in surgery early next week. May be an opportunity to take a close look at the pancreas and see what the situation is there as well. Beats hell out of a CT scan. They couldn't even see the tumor/mass in the last CT scan but they said it was the same size. Yeah, this from the guy who said I had a mass in the middle of my pancreas until my oncologist called him back and made him re-evaluate the reading. Modern medicine, two steps removed from shaking neck bones of a chicken onto a floor painted with sacred symbols. And we already spend 20% of our GDP on health care.
Check back for details folks.
Phone calls are ensuing. Primarily to my gastroenterologist who placed the stent. I have a while before this comes to any sort of climax. But worst case I may end up back in surgery early next week. May be an opportunity to take a close look at the pancreas and see what the situation is there as well. Beats hell out of a CT scan. They couldn't even see the tumor/mass in the last CT scan but they said it was the same size. Yeah, this from the guy who said I had a mass in the middle of my pancreas until my oncologist called him back and made him re-evaluate the reading. Modern medicine, two steps removed from shaking neck bones of a chicken onto a floor painted with sacred symbols. And we already spend 20% of our GDP on health care.
Check back for details folks.
Wednesday, November 18, 2009
Today is 8 months since my diagnosis
I have now outlived more than 85% of all pancreatic cancer patients. To mark the occasion I started working out again. I walked the dogs for about 2 miles and then covered another three on a walking machine at the gym. I also worked my upper chest and arm muscles. I did some abdominal crunches. Did I tell you that I have a stent in my bile duct? I was reminded of it when I did the crunches. Stents do not like that exercise I have discovered. It is now indelibly etched into whatever semblance of a mind I have left that stents react very badly to abdominal crunches. I hurt bad. I need to go take some pain meds and lay down.
Happy anniversary to me. Eight months and counting. Next mile marker is 12/28, Ct scan, 12/29 60th birthday, 12/30 oncologists consult. January 4, chemo begins. I hate my daily planner.
Happy anniversary to me. Eight months and counting. Next mile marker is 12/28, Ct scan, 12/29 60th birthday, 12/30 oncologists consult. January 4, chemo begins. I hate my daily planner.
Regular life and a schedule
Awake again in the night. Every night is different since chemo and I started having this thing. Some nights I am up at 2 am and in bed again at 5:50. Night before last I got a glorious full night of sleep. All the conditions were right and I slept through the night and felt well rested. This morning I woke at about 5 am. I feel rested but I wonder what it will take to get a regular schedule of sleep and wake. I ponder this as the process that destroyed my schedule looms ahead. Chemotherapy destroys all schedules.
The chemo is a mess of preparation chemicals that make it so your body won't react violently to the chemotherapy, and chemotherapy itself is a mess of noxious chemicals that are so bad the staff has to wear bio suits just to introduce it into your body. I wrote before about the effects of the chemo prep and chemo itself. The day of chemo is a schedule killer itself. The prep chemicals make you drowsy and sedated. These are different things really, drowsy makes you detached from the world and sedated means you will sleep for an inordinate amount of time later. Chemo just makes you want to be sleeping and detached from the world. So you sleep all day, some of the night, then all morning, up for an hour, most of the afternoon is spent in bed and at bedtime you feel like crap but can't sleep. So sleep becomes an issue of when and how well, for months on end. When I went on chemo holiday I thought I could get a normal sleep cycle. Seems you can't have a normal sleep cycle if you don't have a normal life cycle. And I don't.
I ponder establishing a schedule only to have it destroyed in six weeks or so. What is the point? On the other hand there is discipline and always striving to get what you should have into each day of your life. I should have exercise and I should have human contact and I should have a normal meal cycle. I could work to achieve that for the short term and be happy with that for a short period of time. And then try to establish as normal a cycle as I can during chemo. Now there would be a challenge. I think maybe I will this time.
My wife tries to allay my fears of chemo. She says the biopsy and the stent placement made me very weak and caused a lot of pain when I started chemo the first time and that made the whole thing nearly unbearable. I will acknowledge that later on in the cycle I was pretty much unaffected by the chemo infusions. Except for that whole steroid thing that kept me awake from Thursday afternoon to Friday night. I mean other than that. Okay so maybe I can plan a regular life schedule and get some exercise and get out of the house and do some of the things I want to do and just have one huge gap from Thursday morning to Saturday morning and live with that. Sounds like a government program that works some of the time but not all the time.
On the other hand I am liking the idea of living my life like a teenager, let it flow and see what it is like. Everyday is a new beginning. Ad hoc lifestyle of the undisciplined youngster. I have that now, I'm not seeing a great benefit to it.
I think I will try a short term process. First I will fix breakfast for my wife, have a light meal myself and go to the gym. then let the rest of the day plan itself. Or maybe do what I call the 'trek' where I walk for about an hour and a half at top speed and cover about 6 or 7 miles. It is cool this morning so I can not end up sweat soaked like I did in September when it was 80 degrees at sunup. Just something to break the tedium of indolence. Then there is the whole 'getting out of the house' requirement.
I haven't worked outside the house literally since about 2001. My last days at my last office job were spent waiting for something to go wrong so I would get a chance to do something. I spent a lot of time waiting for the phone to ring so I almost never went to the office. I sat at home and surfed the net. Then I had a business I ran out of the house. Lots of activity, not much money and finally no enthusiasm for the business. Now I sit home and look for a job. I always forget and get on line and look for a real job, then halfway down the third job site I remember, 1/4/2010, the day lights may go out for 18 weeks or more. Even if the world isn't completely dark, that doesn't mean I will be able to work full time. To quote another cancer victim 'it depends on how I feel'. Yeah, plan a schedule when you don't know if you'll be up and ready or nauseous and tired. So I need to plan some fall back positions. I'll let you know how that goes.
The chemo is a mess of preparation chemicals that make it so your body won't react violently to the chemotherapy, and chemotherapy itself is a mess of noxious chemicals that are so bad the staff has to wear bio suits just to introduce it into your body. I wrote before about the effects of the chemo prep and chemo itself. The day of chemo is a schedule killer itself. The prep chemicals make you drowsy and sedated. These are different things really, drowsy makes you detached from the world and sedated means you will sleep for an inordinate amount of time later. Chemo just makes you want to be sleeping and detached from the world. So you sleep all day, some of the night, then all morning, up for an hour, most of the afternoon is spent in bed and at bedtime you feel like crap but can't sleep. So sleep becomes an issue of when and how well, for months on end. When I went on chemo holiday I thought I could get a normal sleep cycle. Seems you can't have a normal sleep cycle if you don't have a normal life cycle. And I don't.
I ponder establishing a schedule only to have it destroyed in six weeks or so. What is the point? On the other hand there is discipline and always striving to get what you should have into each day of your life. I should have exercise and I should have human contact and I should have a normal meal cycle. I could work to achieve that for the short term and be happy with that for a short period of time. And then try to establish as normal a cycle as I can during chemo. Now there would be a challenge. I think maybe I will this time.
My wife tries to allay my fears of chemo. She says the biopsy and the stent placement made me very weak and caused a lot of pain when I started chemo the first time and that made the whole thing nearly unbearable. I will acknowledge that later on in the cycle I was pretty much unaffected by the chemo infusions. Except for that whole steroid thing that kept me awake from Thursday afternoon to Friday night. I mean other than that. Okay so maybe I can plan a regular life schedule and get some exercise and get out of the house and do some of the things I want to do and just have one huge gap from Thursday morning to Saturday morning and live with that. Sounds like a government program that works some of the time but not all the time.
On the other hand I am liking the idea of living my life like a teenager, let it flow and see what it is like. Everyday is a new beginning. Ad hoc lifestyle of the undisciplined youngster. I have that now, I'm not seeing a great benefit to it.
I think I will try a short term process. First I will fix breakfast for my wife, have a light meal myself and go to the gym. then let the rest of the day plan itself. Or maybe do what I call the 'trek' where I walk for about an hour and a half at top speed and cover about 6 or 7 miles. It is cool this morning so I can not end up sweat soaked like I did in September when it was 80 degrees at sunup. Just something to break the tedium of indolence. Then there is the whole 'getting out of the house' requirement.
I haven't worked outside the house literally since about 2001. My last days at my last office job were spent waiting for something to go wrong so I would get a chance to do something. I spent a lot of time waiting for the phone to ring so I almost never went to the office. I sat at home and surfed the net. Then I had a business I ran out of the house. Lots of activity, not much money and finally no enthusiasm for the business. Now I sit home and look for a job. I always forget and get on line and look for a real job, then halfway down the third job site I remember, 1/4/2010, the day lights may go out for 18 weeks or more. Even if the world isn't completely dark, that doesn't mean I will be able to work full time. To quote another cancer victim 'it depends on how I feel'. Yeah, plan a schedule when you don't know if you'll be up and ready or nauseous and tired. So I need to plan some fall back positions. I'll let you know how that goes.
Monday, November 16, 2009
Cancer is a fight
Cancer is described as a fight. Problem is that the 'fight' is not so much a direct confrontation between the patient and the cancer as it is a contest between the treatment, in my case chemotherapy, and the cancer cells. The patient is more of a spectator to the fight. The patient is just along for the ride, depending on secret tests and the outcome of blood sample tests and all sorts of other things that are decided elsewhere out of my presence and the results are prepared and delivered during a consult at the cancer center several days later.
That is what is making this time especially hard. I am currently on chemo holiday, letting my body heal enough that I can go back into chemo in approximately 6 weeks. Right now I am waiting patiently for the chemo, knowing full well it will devastate my life. The chemo regimen I am on is called GTX. It is said to be one of the toughest regimens being used. It will rob me of some of every aspect of my life. My mind will be muddled, I will become forgetful of details, my vocabulary will shrink. My endurance will dwindle, my patience and attitude will suffer considerably. These things I know and fear will come when the chemo resumes and that makes me apprehensive.
During the intervening weeks between now and the resumption of chemo I have to deal with severe anxiety and stress associated with having the cancer and then the added stress of the anticipation of the coming challenges of chemo. I realize the risks associated with having pancreatic cancer so I want to deal with that illness. I want to remove the cancer from my list of concerns because those concerns seem to be on a par with or override almost every other aspect of my life. But I cannot do anything about the cancer right now; in six weeks I will once again be involved, if just as a very interested spectator, in the fight for my life. My body isn't ready for the devastation of the chemo just yet, so I sit, and wait, and dread the coming fight.
Meantime the anxiety and stress of cancer distort my daily life. Little issues become stretched way out of shape. Emotional stress from my family becomes a major issue as what is going on inside me exaggerates the personal conflicts into a weird world of surreality. I can no longer depend on my judgment as to what is an issue to be dealt with and what is of no concern. I cry at the drop of a hat. Even little events in a television show can cause me to get all teared up. I overreact and I under react, unpredictably, uncontrollably.
I have been awake now for several hours anguishing over minuscule challenges I might face in the days ahead. When I try to sleep my mind races and bounces off every little thought onto another one and never stops. When I get up it goes blank as if nothing whatsoever is wrong. I wrote most of this blog entry while laying in bed trying to sleep for the last hour. Today will become another day where I try to sleep during the morning so I can have some of the day left to get something done. I want to go take a chill pill but I am afraid it will knock me out all day. If I don't take one the cycle will certainly get more out of kilter.
I wish I could just start chemo tomorrow and get on with it, get the cancer either gone or know the outcome is certain. Uncertainty is a gnawing away of your vision of life, in this case it is causing a great disruption to everything I do in life. So here I sit, unable to do anything while I watch this bizarre life around me where little things become major episodes and other things don't even register, important or not. Where I can't depend reliably on my judgment and have to second guess my every interaction. And oh yeah, I lose sleep all night while I worry about it all. So I write what I can capture of it down in my blog and try to hang on.
That is what is making this time especially hard. I am currently on chemo holiday, letting my body heal enough that I can go back into chemo in approximately 6 weeks. Right now I am waiting patiently for the chemo, knowing full well it will devastate my life. The chemo regimen I am on is called GTX. It is said to be one of the toughest regimens being used. It will rob me of some of every aspect of my life. My mind will be muddled, I will become forgetful of details, my vocabulary will shrink. My endurance will dwindle, my patience and attitude will suffer considerably. These things I know and fear will come when the chemo resumes and that makes me apprehensive.
During the intervening weeks between now and the resumption of chemo I have to deal with severe anxiety and stress associated with having the cancer and then the added stress of the anticipation of the coming challenges of chemo. I realize the risks associated with having pancreatic cancer so I want to deal with that illness. I want to remove the cancer from my list of concerns because those concerns seem to be on a par with or override almost every other aspect of my life. But I cannot do anything about the cancer right now; in six weeks I will once again be involved, if just as a very interested spectator, in the fight for my life. My body isn't ready for the devastation of the chemo just yet, so I sit, and wait, and dread the coming fight.
Meantime the anxiety and stress of cancer distort my daily life. Little issues become stretched way out of shape. Emotional stress from my family becomes a major issue as what is going on inside me exaggerates the personal conflicts into a weird world of surreality. I can no longer depend on my judgment as to what is an issue to be dealt with and what is of no concern. I cry at the drop of a hat. Even little events in a television show can cause me to get all teared up. I overreact and I under react, unpredictably, uncontrollably.
I have been awake now for several hours anguishing over minuscule challenges I might face in the days ahead. When I try to sleep my mind races and bounces off every little thought onto another one and never stops. When I get up it goes blank as if nothing whatsoever is wrong. I wrote most of this blog entry while laying in bed trying to sleep for the last hour. Today will become another day where I try to sleep during the morning so I can have some of the day left to get something done. I want to go take a chill pill but I am afraid it will knock me out all day. If I don't take one the cycle will certainly get more out of kilter.
I wish I could just start chemo tomorrow and get on with it, get the cancer either gone or know the outcome is certain. Uncertainty is a gnawing away of your vision of life, in this case it is causing a great disruption to everything I do in life. So here I sit, unable to do anything while I watch this bizarre life around me where little things become major episodes and other things don't even register, important or not. Where I can't depend reliably on my judgment and have to second guess my every interaction. And oh yeah, I lose sleep all night while I worry about it all. So I write what I can capture of it down in my blog and try to hang on.
Friday, November 13, 2009
Need to recharge some emotional batteries.
Ahh, ever the quest for knowledge. I asked my oncologist's nurse today about how many pancreatic patients she has seen survive. She is a very effective press secretary. She referred me to the National Cancer Institute for more information. So I went there.
I got the same old stats from that site, pretty much I'm screwed, I have a 5.5% chance of surviving more than 5 years. But I kept looking because basically I may be masochistic or curious. I found some interesting stuff that may terminate my shrink sessions. Turns out that terminal cancer causes stress in the victim/patients. Who would have guessed that? Well, once you get past the sarcasm it turns out that there are two emotional episodes that come to light. First, PTSD, that thing the liberals are all sure screwed all of us 'Nam vets is very real and comes out in full flower when cancer strikes. Yeah, you get all weirded out about terminal cancer and it begins to take a toll on you, imagine that. And the other is 'extreme anxiety syndrome'. For some unfathomable reason the web site categorizes them as separate disorders. As if being extremely stressed out over your own demise was supposed to be a soothing event like a Kenny G concert with some really good Colombian.
Yeah, I got both symptoms. Don't alarm me, don't do much of anything out of the ordinary. I may come unglued. No 'surprises' is a good idea around me. I grew up around four brothers, three of 'em thought it was fun to attack me by surprise. I learned all I need to know about hand to hand combat from them. I can go to attack mode faster than you want to know. A term that has bandied about to describe me is 'hypervigilant'. Comes from my childhood. And for the last several months it has been building in me. Since it seemed old and familiar I never saw it. Once recognized, I can deal with it properly.
So today I put a few more pieces of the puzzle together. I returned the book my shrink gave me. I may terminate the sessions. What more do I need to know than a few very basic facts about my life? Life can be simple if you let it be. So I have my glass of wine, a quiet house and Jimmy Buffet coming into my ears. I may load up a stack of Steely Dan and crawl into my cave for some solace. It has been a long time since this all started and I am running low on juju. Need to recharge some emotional batteries.
I got the same old stats from that site, pretty much I'm screwed, I have a 5.5% chance of surviving more than 5 years. But I kept looking because basically I may be masochistic or curious. I found some interesting stuff that may terminate my shrink sessions. Turns out that terminal cancer causes stress in the victim/patients. Who would have guessed that? Well, once you get past the sarcasm it turns out that there are two emotional episodes that come to light. First, PTSD, that thing the liberals are all sure screwed all of us 'Nam vets is very real and comes out in full flower when cancer strikes. Yeah, you get all weirded out about terminal cancer and it begins to take a toll on you, imagine that. And the other is 'extreme anxiety syndrome'. For some unfathomable reason the web site categorizes them as separate disorders. As if being extremely stressed out over your own demise was supposed to be a soothing event like a Kenny G concert with some really good Colombian.
Yeah, I got both symptoms. Don't alarm me, don't do much of anything out of the ordinary. I may come unglued. No 'surprises' is a good idea around me. I grew up around four brothers, three of 'em thought it was fun to attack me by surprise. I learned all I need to know about hand to hand combat from them. I can go to attack mode faster than you want to know. A term that has bandied about to describe me is 'hypervigilant'. Comes from my childhood. And for the last several months it has been building in me. Since it seemed old and familiar I never saw it. Once recognized, I can deal with it properly.
So today I put a few more pieces of the puzzle together. I returned the book my shrink gave me. I may terminate the sessions. What more do I need to know than a few very basic facts about my life? Life can be simple if you let it be. So I have my glass of wine, a quiet house and Jimmy Buffet coming into my ears. I may load up a stack of Steely Dan and crawl into my cave for some solace. It has been a long time since this all started and I am running low on juju. Need to recharge some emotional batteries.
Thursday, November 12, 2009
Sometimes if you study a problem long enough you have to finally acknowledge that the best solution is to just ignore the problem. After a session with my shrink wherein I ranted and raved about the threat of dying of cancer and how my life seemed to have come to a stop, I was sort of ashamed of myself for being such a wuss. My shrink has a thing about how God can solve all the problems if you just trust in Him. The cynic in me asks the question then, if God is in control of everything, then how come I gotta ask him to remove the threat he placed on my life? Makes no sense to me.
I had been thinking about how I have been relatively immobilized by the threat posed by my cancer. Why go through the motions of living if it was all going to end soon anyway? Yeah, maybe I'll survive, but for how long is the question. Like Swayze, maybe I have a few months at most, or maybe a year. Then again I could outlast my shrink who so ardently believes in God. Don't get me wrong, I believe in God, I just don't believe in this stuff about the pearly gates and asking am I worthy to pass through them. My God has infinite patience and a cruel sense of humor. He doesn't play silly games with righteous morality that can be turned on a religious bit of piety and a set of judgments on what I did or did not do and if so why not? No, my God has a strict sense of straight to it methods of delivery. He gives you a bunch of crap in life because that is what life is, a long series of challenges, for no particular reason really and usually in no particular order. But the randomness of the awful events raises the stakes a bit more than a life full of milk and honey mixed with indolence and pleasure. And this life can be a real bitch. Witness pancreatic cancer. So, how best to deal with it?
I will apply the only logic that can be applied. Break the situation down to usable parts and solve them individually. In this case, the pancreatic cancer is simple enough to describe. It is an affliction that may take my life, and while it hasn't yet it can make my life pretty miserable. I can get chemo for it and I can do what my doctor says to do and hope it works. Past that, there isn't diddly I can do. I could pray, but again, who would I be talking to except the God who gave me this disease. Like asking the IRS to excuse me for not paying taxes for no particular reason except I don't feel like paying them. So, I will have to go about solving this whole impasse by simply ignoring the cancer as best I can when I can.
That means picking up my books and studying web programming until I can claim some sort of knowledge then getting a few gigs and proceeding like I have a future. Because sure as hell unless I anticipate having a future and acting like I have one, I probably won't. I mean except for a life of dread and fear of the life I might have before the cancer takes me. It ain't got me yet, and the timing of the end is uncertain. I ain't laughing at God in feeling like this. I'm just not pissing my pants in fear in the mean time.
I had been thinking about how I have been relatively immobilized by the threat posed by my cancer. Why go through the motions of living if it was all going to end soon anyway? Yeah, maybe I'll survive, but for how long is the question. Like Swayze, maybe I have a few months at most, or maybe a year. Then again I could outlast my shrink who so ardently believes in God. Don't get me wrong, I believe in God, I just don't believe in this stuff about the pearly gates and asking am I worthy to pass through them. My God has infinite patience and a cruel sense of humor. He doesn't play silly games with righteous morality that can be turned on a religious bit of piety and a set of judgments on what I did or did not do and if so why not? No, my God has a strict sense of straight to it methods of delivery. He gives you a bunch of crap in life because that is what life is, a long series of challenges, for no particular reason really and usually in no particular order. But the randomness of the awful events raises the stakes a bit more than a life full of milk and honey mixed with indolence and pleasure. And this life can be a real bitch. Witness pancreatic cancer. So, how best to deal with it?
I will apply the only logic that can be applied. Break the situation down to usable parts and solve them individually. In this case, the pancreatic cancer is simple enough to describe. It is an affliction that may take my life, and while it hasn't yet it can make my life pretty miserable. I can get chemo for it and I can do what my doctor says to do and hope it works. Past that, there isn't diddly I can do. I could pray, but again, who would I be talking to except the God who gave me this disease. Like asking the IRS to excuse me for not paying taxes for no particular reason except I don't feel like paying them. So, I will have to go about solving this whole impasse by simply ignoring the cancer as best I can when I can.
That means picking up my books and studying web programming until I can claim some sort of knowledge then getting a few gigs and proceeding like I have a future. Because sure as hell unless I anticipate having a future and acting like I have one, I probably won't. I mean except for a life of dread and fear of the life I might have before the cancer takes me. It ain't got me yet, and the timing of the end is uncertain. I ain't laughing at God in feeling like this. I'm just not pissing my pants in fear in the mean time.
Sunday, November 8, 2009
Friday was my consult for the CT I took Monday. Let's just say it was a bad meeting. I was nervous about it on Thursday. I had been off chemo for three months and I knew there had to be some change in the situation that I was not going to appreciate. Friday mornings my wife and I go to breakfast and we did this past Friday as well. I was so tensed out about the consult that I actually had tears in my eyes through breakfast. We got to the consult at the proper time and then we waited.
We waited for an hour. The oncologist finally came in and he was a little off his usual demeanor. He had read over the radiologist's report and had to call him back because the report was for a pancreatic cancer that was in the middle of the pancreas, not where my cancer was. So he had to cajole the radiologist to re-evaluate my CT. The determination was that the mass had not increased in size. The blood work showed that my CA-19s had gone from 225 to somewhere around 641. That is bad, comparatively it is still in a comfort zone of sorts (it can got o 20,000 or higher), but still having increased by a factor of three, I was not at all happy with the news. The determination was made that I will go back on chemotherapy after the first of the year, the full regimen, Taxotere, Gemxar and Xeloda. That means my hair will fall out again and my finger nails will go yellow again and all the other outward signs of being in chemo. Not to mention having to go through days of feeling like roadkill and losing my mental ability to do much of anything. Chemo sucks and I have no good feelings about facing it again except it is necessary to kill this little demon inside me. But I don't go on chemo until after the holidays, sort of a lackadaisical emergency, plenty of time to contemplate the onset of chemical hell.
Needless to say by the time I left the cancer center I was destroyed, in tears, bummed out, and feeling like I was at the bottom of my spirit. It has been 48 hours now and I am just now starting to get some wind in my sails again. I have gotten some notes from friends and calls from relatives. That all makes me feel better, but the actual analysis of where and how the consult went wrong is the process that let me see how the situation could have been mitigated and from there how I needed to adjust my perception. (Boy, talk about rationalizations!) I had to re-examine every aspect of that consult to see that the situation was really not so bad, just delivered in a way that accentuated every negative aspect there was. I knew my CA-19s might go up, I knew I was going back on chemo sometime, just when was the question. Finding out my radiologist had either misread my CT or reported on the wrong CT leaves me without much faith in his ability. That the doctor had not read the report prior to me showing up at the cancer center leaves me a little uneasy. But they are humans and overworked besides, and I guess these things happen. It was a aggregation of bad events and unpleasant news that left me pretty much devastated. I am climbing out of the hole this Sunday morning feeling like I might actually live, if not without cancer today, then maybe sometime in the future rather than dying. It's the small things in life that eventually make you happy.
Now I have to go mow the lawn and do yard work. Those are little joys of life so unappreciated by people who have never had death tapping its toe in front of them and checking its watch every few seconds. Don't ever let anybody tell you that death is patient. The little bastard is quite impatient. And he gets pissy when denied his harvest.
We waited for an hour. The oncologist finally came in and he was a little off his usual demeanor. He had read over the radiologist's report and had to call him back because the report was for a pancreatic cancer that was in the middle of the pancreas, not where my cancer was. So he had to cajole the radiologist to re-evaluate my CT. The determination was that the mass had not increased in size. The blood work showed that my CA-19s had gone from 225 to somewhere around 641. That is bad, comparatively it is still in a comfort zone of sorts (it can got o 20,000 or higher), but still having increased by a factor of three, I was not at all happy with the news. The determination was made that I will go back on chemotherapy after the first of the year, the full regimen, Taxotere, Gemxar and Xeloda. That means my hair will fall out again and my finger nails will go yellow again and all the other outward signs of being in chemo. Not to mention having to go through days of feeling like roadkill and losing my mental ability to do much of anything. Chemo sucks and I have no good feelings about facing it again except it is necessary to kill this little demon inside me. But I don't go on chemo until after the holidays, sort of a lackadaisical emergency, plenty of time to contemplate the onset of chemical hell.
Needless to say by the time I left the cancer center I was destroyed, in tears, bummed out, and feeling like I was at the bottom of my spirit. It has been 48 hours now and I am just now starting to get some wind in my sails again. I have gotten some notes from friends and calls from relatives. That all makes me feel better, but the actual analysis of where and how the consult went wrong is the process that let me see how the situation could have been mitigated and from there how I needed to adjust my perception. (Boy, talk about rationalizations!) I had to re-examine every aspect of that consult to see that the situation was really not so bad, just delivered in a way that accentuated every negative aspect there was. I knew my CA-19s might go up, I knew I was going back on chemo sometime, just when was the question. Finding out my radiologist had either misread my CT or reported on the wrong CT leaves me without much faith in his ability. That the doctor had not read the report prior to me showing up at the cancer center leaves me a little uneasy. But they are humans and overworked besides, and I guess these things happen. It was a aggregation of bad events and unpleasant news that left me pretty much devastated. I am climbing out of the hole this Sunday morning feeling like I might actually live, if not without cancer today, then maybe sometime in the future rather than dying. It's the small things in life that eventually make you happy.
Now I have to go mow the lawn and do yard work. Those are little joys of life so unappreciated by people who have never had death tapping its toe in front of them and checking its watch every few seconds. Don't ever let anybody tell you that death is patient. The little bastard is quite impatient. And he gets pissy when denied his harvest.
Sunday, November 1, 2009
Tomorrow is the next CT scan. The usual crap, drink some foul tasting chemical that will somehow highlight my innards to the donut shaped electronic gizmo that they will run me through. They test me on Monday. Friday is Ground Hog day. If the specialist sees a shadow on my scan, it's six more week of chemo.
I've had two good scans and my CA-19s have dropped both times. How long will my luck hold? Yeah I'm nervous. I need to pass every test. The stakes are really high. Failure is an option that has deep, deep ramifications.
I'm going to be sleeping very restless tonight.
I've had two good scans and my CA-19s have dropped both times. How long will my luck hold? Yeah I'm nervous. I need to pass every test. The stakes are really high. Failure is an option that has deep, deep ramifications.
I'm going to be sleeping very restless tonight.
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